patient voice Archives

patient voice

26th October 2021

Whose Voice Is It Anyway?

Jo McPherson M4RD, Patient Advocacy Groups, Report, UK Rare Disease Framework M4RD, NHS England & Improvement, NHSE&I, patient voice, RareQOL, UK Rare Disease Framework, WhoseVoice

On Thursday 27 May 2021 Sondra Butterworth, CEO of RareQoL and founder of the #WhoseVoice campaign, and Lucy McKay from M4RD hosted an engagement session on the UK Rare Diseases […]

29th September 2021

Not your usual heart attack

Jo McPherson daretothinkrare, disease, interview, medicalstudent, patient, raredisease, Uncategorised diagnosis, Heart, medical education, patient voice, rare disease, SCAD, Spontaneous Coronary Artery Dissection

Heart attacks may not be rare but SCAD is! Today is World Heart Day and although heart attacks may not be rare, there are other causes of heart attacks that […]

15th September 2021

The impact of living with Myotonic Dystrophy

Jo McPherson disease, Genetics, interview, patient, raredisease diagnosis, dystrophy, genetic, MD, medical education, muscular, myotonic, Myotonic Dystrophy, patient voice, rare disease

Doctors are patients too Genevieve Allum is a 34 year old GP who specialises in Dementia and lives on South Coast with her partner. Genevieve was diagnosed with Myotonic Dystrophy […]